Download Guide - Treatment Action Campaign

Pregnancy and HIV/AIDS
A PRACTICAL GUIDE
Treatment Action Campaign/AIDS Law Project
July 2001
Published by the AIDS Law Project and the Treatment Action
Campaign
Written by Fatima Rahiman and Deborah Ewing; based upon
Pregnancy and HIV/AIDS: Recommended Code of Best Practice,
October 1997.
Thank you to Haroon Saloojee for his assistance.
This publication may be freely distributed and reproduced, as
long as the source is acknowledged and it is not modified.
For further information contact :
The AIDS Law Project
Treatment Action Campaign
Tel: 011 717 8600
Tel: 021 364 5489
Fax: 011 403 2341
Fax: 021 364 9514
E-mail: alpadm@law.wits.ac.za Email: info@tac.org.za
This booklet sets out standards of care, counseling and treatment that all
pregnant women are entitled to. It is in keeping with the Department of Health’s
National Patient’s Rights Charter and the Health Professions Council Guidelines
on The Management of Patients with HIV Infection or AIDS, which state the
general rules for health care workers /doctors when treating patients with HIV.
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Contents
1. Introduction ....................................................................... 4
2. Why worry about HIV/AIDS and pregnancy? .................... 5
3. Basic rights to fair and proper care ................................... 6
5. Step by step guide to testing and counseling ................... 8
6. Who should know your HIV status? ................................ 10
7. Pregnancy, HIV and health care ..................................... 11
8. Points to remember ......................................................... 14
9. Where to get advice ........................................................ 15
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1. Introduction
This booklet is meant to give you important information about pregnancy and
HIV/AIDS. You may be pregnant, you may be the partner, relative or friend of a
pregnant woman, or you may be a health worker. The information in these pages
will help you to make decisions about getting the best health care for mother and
baby.
The statistics about HIV/AIDS in South Africa are so alarming that it can be
easier not to think about them – especially during pregnancy when there are so
many other important concerns. This booklet explains some of the facts about
HIV/AIDS and pregnancy. It describes in a simple way how HIV can be
transmitted to a baby. It sets out a HIV infected woman’s rights to proper care,
how to reduce the risk of transmitting HIV and how to increase the chances of
giving birth to a healthy baby.
Being well-informed is the first step to taking control of your health and
supporting those you care about.
At the end of the booklet you will find the contact details for organisations that
can give you more information and advice.
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2. Why worry about HIV/AIDS and pregnancy?
South Africa has one the fastest growing HIV epidemics in the world. In 2000 it
was estimated that about 4.7 million South African people were infected with HIV,
the virus that causes AIDS. Of these, 2.2 million were girls and women aged
between 15 and 49 years – that is, women of child-bearing age.
Women are more at risk than men of becoming infected with HIV/AIDS, for
several reasons:

vaginal tissue is very fragile. It can tear easily during sexual intercourse,
allowing the virus to enter the blood;

many men have more than one sexual partner but refuse to wear a condom,
so if they are HIV positive they can infect and reinfect their wives and
girlfriends;

rape is common in South Africa so women face a high risk of getting HIV
regardless of their own behaviour;

women are still not treated equally in South Africa and are less likely than
men to have access to appropriate health care and information.
A woman who has HIV faces many obstacles to receiving appropriate information
and treatment. The pregnant woman with HIV faces the additional worry that she
may pass the virus to her baby. At least 30 of every 100 HIV positive pregnant
women in South Africa will transmit HIV to their babies. This is called mother to
child transmission. It mostly happens during delivery, but may also occur while
the baby is in the womb or after birth during breastfeeding.
The risk of a mother with HIV passing the virus to her baby can be reduced by
medication.
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3. Basic Rights to fair and proper care
South Africa’s Constitution includes a Bill of Rights, which is a list of the basic
human rights we all have as South Africans. The law protects these rights, which
say that all people must be treated fairly. No one can take away these rights to
fair treatment. They apply to everyone – women, men and children, regardless of
whether a person is single, married or pregnant.
The Bill of Rights states: “everyone has the right to freedom and security of the
person”. This means that we all have the right of control over our bodies and to
make decisions about reproduction. This includes the rights to:

Decide how many children we will have and when;

Receive information about contraception so we can decide what is best for
us;

Receive the best possible health care during pregnancy; and

Make decisions about reproduction without being discriminated against or put
under pressure.
In 1999, the Government issued the National Patients’ Right’s Charter, which
supports the Bill of Rights by providing guidelines on rights of access to health
care services. All government health care workers must follow these guidelines.
Patients’ rights are especially important for women since they are linked to other
valuable rights, such as the rights to equality, dignity and privacy.
4. Health rights and HIV
The Department of Health, in its National AIDS Five Year Plan, has committed
itself to improving access to reproductive health services for women with HIV, to
help reduce the rate of mother to child transmission.
We all have the right to confidential (private) counseling and testing for HIV.
However, women are sometimes discriminated against in the health system
when they are tested. Often women are tested without their informed consent –
that means without being told exactly what they are agreeing to. Some health
workers tell other people about a woman’s HIV status. They do not respect the
right to confidentiality – that means the right to keep personal information
private.
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Women are sometimes not given enough information about their health and
possible treatments to make the choices that are best for them. Health care
workers can impose their own views and prejudices on patients who don’t have
accurate information. For example, some women undergo abortions or are
sterilised without knowing enough about their rights and options to make the
most suitable choice.
It is a woman’s reproductive right to be given information that will allow her to
make the best decisions about her pregnancy and her health.
If you are living with HIV/AIDS, or providing care or health services so someone
living with HIV/AIDS, it is very important that you have up-to-date information on
HIV and pregnancy, and on how to lower the risk of mother to child transmission
of HIV.
Health care workers have a duty to provide the public with access to the following
information:

why women have a higher risk of getting HIV infection;

steps that can be taken to lessen this risk;

how having HIV or being involved with someone who has HIV can affect
decisions about reproduction;

a woman’s right to end or continue with a pregnancy whether or not she has
HIV;

steps a pregnant woman can take to lessen the effect of HIV on her health
and to reduce the risk of HIV being passed on to the unborn baby;

steps that can be taken during delivery of the baby to reduce the risk of HIV
being passed on to the baby;

whether these steps are available and how much they would cost;

the risks and advantages of breastfeeding a baby if the mother has HIV.
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5. Step by step guide to testing and counseling
If you decide to go for an HIV test, you must be properly counseled – that means
you should be given information and advice – about what the test is, why it is
being done and what the result will mean for you. This is known as pre-test
counseling. It is important because it helps you to understand how HIV is
transmitted and how a positive or a negative result may change your life, before
you actually have a test.
Pre-test Counseling (counseling before an HIV test)
You must be offered counseling (advice and information) before an HIV test.

If, after counseling, you decide not to have an HIV test, the health
care worker must respect your decision.

The counseling before the test must provide you with all the
information necessary to understand what an HIV test involves and
the possible effects the results may have on your life.

You must be counseled in a language that you understand.

You must be given clear information about when and where you can
obtain your results.
If you are pregnant, when you go for your first check-up, you should request to a
pre-HIV test counseling session. It should follow these steps:

HIV testing should be offered early in your pregnancy. Knowing your HIV
status is important when you decide to continue or end your pregnancy.
It affects the treatment options available for your health, the medical
steps that can lessen the possibility of HIV passing on to the baby and
the decision to breastfeed or bottlefeed.

You may only be tested for HIV after you have given informed consent
– remember, that means after you have been given enough information
to decide whether you want to be tested. You cannot be forced to take an
HIV test and a doctor or health worker can only accept your consent if
she or he has given pre-test counseling as set out in the National Testing
Policy.

The baby may only be tested when the doctor or nurse believes that this
information may influence his/her further care and treatment. This may
only be done after the mother, father or legal guardian has received pretest counseling and given their informed consent.
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When the doctor or health worker tells you the result of your HIV test, he or she
must give you information and advice about the effect the result may have on
your life. This is called post-test counseling and it must be done whether the
result is negative or positive. It is important because if you are negative, the
counsellor will advise you how to stay that way. If you are positive, the
counsellor will advise you how to stay healthy, how to protect your partner and
how to deal with your emotions and mental well-being.
Post-test Counseling (counseling you receive after your test)
Anyone who has an HIV test must be given post-test counseling.
Negative HIV Test Results:
If your result is negative (meaning that no evidence of the virus was
found in your blood at the time of the test), post-test counseling should
include information on:

the importance of safer sex and how to practice it;

that you could still test positive in the future
Positive HIV Test Results:
If your result is positive (the test shows that the virus is present in your
blood), post- test counseling should include the following information:

available treatment and steps you can take to support your health, such as
the importance of eating healthily;

the number of years you can expect to live healthily as a person living with
HIV/AIDS and the way the disease progresses in women, men and children.

the importance of practising safer sex. The higher the level of HIV in your
blood, the greater the risk of passing on the virus; so avoid re-infecting
yourself and your partner, or infecting yourself with a different type of virus,
especially during pregnancy and breastfeeding;
If you are pregnant:

the effect of birth control methods and pregnancy on the development of HIV;

your right to end the pregnancy (abortion) and the effect this may have on
your health;
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
the possibility of the HIV passing to the unborn baby (fetus) during your
pregnancy and to the baby during delivery and breastfeeding;

available treatment options and medical steps to reduce the risk of passing
HIV just before childbirth, during delivery and just after childbirth (postpartum)

the importance of completing the full course of treatment (compliance) and
the possible side effects of the drugs taken for your health or used to prevent
the passing of HIV to the baby;

the advantages and disadvantages of breastfeeding if you are infected with
HIV, including correct information on the risks of passing HIV through
breastmilk and the conditions necessary to be able to feed the baby milk
formula safely.
If you have HIV, you can and should continue going for counseling regularlyto
discuss any problems or questions you have. These might be questions about
your health but also about your legal rights, money matters, employment issues
and other concerns.
6. Who should know your HIV status?
We all have a legal and ethical right to confidentiality. This means that
information about anyone’s state of health, or the treatment they are receiving, is
private. Health care workers have no right to tell another health care worker
about anyone’s HIV status. If this information is necessary for your treatment and
care, the healthcare worker must first get your permission (informed consent)
before telling another health care worker.
During counseling, you should be told about the advantages and possible
problems of disclosing your HIV status. You need to understand these before you
give your consent for a health care worker to tell another health care worker your
status.
Your records, which show your HIV status, must be safely stored to protect your
privacy.
You should be given information about group counseling and organisations that
can offer support. If it is possible, it is advised that your partner/s and or your
close family members be included in the counseling, so that you can have
someone close to you who understands and supports you. It is also advised that
your sexual partner should attend post-test counseling with you, so that you can
support each other. However you must give your consent to this.
A health care worker may only inform your sexual partner of your HIV status
against your wishes if:
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
you have been counseled on the need to inform your sexual partner of your
HIV status or to practice safe sex and you refuse to do so; or

the health care worker has informed you of their duty to protect other people
at risk and has warned you that if you do not inform your sexual partner or
practice safer sex, they will disclose (tell) your status.
7. Pregnancy, HIV and health care
Everyone has the right to information about all available medical treatment to
maintain or improve their health. Pregnant women living with HIV have the right
to such information, including the availability of such treatment, whether it is
provided free, if it is not free what the costs are and what are the benefits and
possible side effects. Any treatment given to a pregnant woman should be
concerned with her health and well-being, as well as that of her baby.
Since HIV can be transmitted to a baby during pregnancy, during birth and during
breastfeeding, we need to consider the best treatment options at each of these
stages:
During your pregnancy (prepartum)
Very few babies are infected during the pregnancy itself. However, the way that
you live your life while you are pregnant can help to reduce the risk during
delivery or breastfeeding. This is the time when it is very important to eat well,
stay healthy and avoid re-infection with HIV.
It is your right to ask for and be given information on the risks and benefits of any
tests to check the development of the baby inside the womb. Some tests, such
as an amniocentesis (a test that checks for Downs Syndrome by pricking the
amniotic sac and withdrawing some amniotic fluid) may increase the risk of the
virus passing to the baby and you can refuse them if you wish. If your health care
worker feels any test is necessary, then you should be offered anti-HIV therapy
first, to help reduce the risk of HIV passing to your baby
There are treatments/medication that reduce the amount of HIV in the body.
These are known as antiretroviral drugs. It is your right to have access to such
treatment. You should be given information including:

What treatment is recommended for women with HIV;

The rates of success and how effective these treatments are in reducing
mother to child transmission;

What is known or not known about the effects of such drugs on yourself
and the baby fetus;
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
The importance of completing the course of treatment correctly.
Your immune status (your body’s ability to fight off illness) should be
checked in case you need medication against the many infections that can
affect people with HIV. You should be treated immediately if you get an
infection, to avoid harming the developing baby.
You must be given information on the importance of nutrition (eating well, taking
iron and folate) and stress management in staying healthy. Poor nutrition and low
weight gain from the mother can increase the risk of a premature or underweight
baby, which increases the risk of transmitting HIV.
You must be told of all known risks and benefits of any treatment offered.
During your labour and delivery
Use of anti-retroviral medicines can reduce the risk of passing on the infection to
your baby by nearly 50%. At the moment the government is using these
medicines only at certain ‘pilot sites’ across the country. However, you have the
right to ask for this medicine.
Treatment that reduces the risk of HIV passing from
mother to baby
The current treatment options recommended for the prevention of
mother-to- child transmission are:

AZT (Zidovudine): A dosage of 300mg is given to you twice a day
from 36 weeks of your pregnancy. This is taken orally. During labour
you must be given 300mg every 3 hours. Your baby should be given
a liquid dosage of 4mg/kg, twice daily for 7 days.

Nevirapine: This is currently the cheapest and most effective
treatment. A single dose of 200mg is given at the onset of your labour
and then one dose of 0,6 mls (2mg/kg) Nevirapine syrup is given to
your baby within 72 hours of birth.
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KEY POINTS:
Both of these medicines are safe for you and your baby, and are
registered in South Africa.
It is important to note that these medicines do not totally prevent
the risk to your child, but they do reduce that risk. You must make
the decision about whether you want to take them.
Even if you take these medicines, there is still a risk that your baby
can be infected through breastfeeding. Discuss with your doctor or
nurse about safe ways of feeding your baby.
You must also be given information on safe practices to reduce transmission of
HIV during delivery. These are important points to consider:

The length of time the baby is exposed to HIV through the mother’s ruptured
(torn) membranes must be kept to a minimum (not longer than four hours).
For example, the midwife or doctor should avoid breaking the water (amniotic
sac).

Caesarean delivery (cutting through the mother’s stomach muscles and
uterus to remove the baby) before the start of labour has been shown to
reduce the risk of transmission of HIV.

Where it is not vital, forceful suctioning of the baby’s mouth and throat should
be avoided.

The baby must be cleaned soon after delivery to remove any HIV-containing
fluid from the skin.
After your baby is born (postpartum)
If you have HIV, your baby should be given the drug called cotrimoxazole (also
known as Bactrim or Septrin) , from four weeks of age until he/she reaches one
year of age. If your baby tests HIV negative at one year, the cotrimoxozole can
be stopped.
Even if HIV is not passed to a baby before or during birth, there is a risk that the
baby can become infected through breastfeeding.
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Breastfeeding:
Exclusive formula feeding is the best way to prevent transmission after birth.
Mothers with HIV should ask for access to milk formula, feeding bottles and
information on safe infant feeding practices – especially the importance of clean
water.
If you live in an area where there is no clean water, or have limited ability to heat
water, or where living conditions are bad, meaning that there is a lot of disease
and dirt that can threaten your babies health, then it may be safer to breastfeed.
This is because breast-milk contains vitamins, and proteins that can help fight
natural illnesses.
But, if you decide to breastfeed, you must be informed about the importance of
exclusive breastfeeding (that is breastfeeding only, not even giving any water) for
six months and then completely stopping breastfeeding. . Mixed feeding i.e.
breast and formula should be avoided.
All infants born to HIV positive mothers should receive regular check-ups for up
to18 months.
8. Points to remember
As a pregnant woman, a partner or friend, or a health worker, there is a lot we
can all do to protect mothers and babies – and everyone else – against
HIV/AIDS.

Demand your right to information – and meet your responsibility to inform
others.

Exercise your right to HIV testing and counseling – and take responsibility for
the result.

If you have HIV, protect yourself against infections by eating as well as you
can and taking vitamins and food supplements if possible.

Go for regular check ups to get information and advice about treatment
options.

Protect yourself and your partner/s against infection or re-infection, by
practising safer sex.

If you have HIV and are pregnant, exercise your right to information and
advice on treatment options to keep you and your baby as healthy as
possible.

If you are HIV negative, stay that way. Protect yourself and your partner/s by
practising safer sex.
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9. Where to get advice
If you want advice on pregnancy and HIV you can contact your local clinic and
speak to a doctor or nurse.
You can call the AIDS Helpline: 0800 012 322 or an AIDS Training and
Information Centre at one of the numbers below:
Cape Town
Durban
East London
Johannesburg
Lowveld
Mpumalanga
Pietermaritzburg
Port Elizabeth
(021) 797 3327
(031) 300 3104
(043) 705 2620
(011) 725 6711/2
(013) 759 2167
(013) 759 2167
(033) 395 1612
(041) 506 1415
You can also contact the Treatment Action Campaign:
Cape Town
Tel:
Fax:
(021) 364-5489
(021) 361-7051
Durban
Tel:
Fax:
(031) 304-3673
(031) 304-3673
Johannesburg
Tel:
Fax:
(011) 403-7021
(011) 403-2106
Email Address:
info@tac.org.za
Website:
http://www.tac.org.za/
The TAC is a campaign for affordable and quality treatment for people living with
HIV/AIDS.
The ALP is a non-governmental organization that campaigns for the rights of
people living with HIV/AIDS, offers legal advice and support and helps with policy
development.
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